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Table 1 Questionnaire Completion Table

From: Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study

Total Instrument Completion
Instrument Completed Surveys Percent Total N
Information About You 290 (+/− specific items) 100% 290
PODCI Parent Reported (1/6 Domain Completed)a 84 91.3% 92
Upper Extremity 74 80.4% 92
Transfer Mobility 79 85.9% 92
Sports Physical Function 75 81.5% 92
Pain Comfort 83 90.2% 92
Happiness 70 76.1% 92
Global Function 70 76.1% 92
PODCI Parent Reported (6/6 Domains Completed) 64 69.6% 92
Proxy-Reported Anxiety Survey 56 86.2% 65
Proxy-Reported Depressive Symptoms Survey 54 83.1% 65
Proxy-Reported Fatigue Survey 52 80.0% 65
Proxy-Reported Pain Interference Survey 51 78.5% 65
Proxy-Reported Mobility Survey 52 80.0% 65
Proxy-Reported Peer Relationships Survey 52 80.0% 65
Adult Anxiety Survey 193 98.0% 197
Adult Depression Survey 192 97.5% 197
Adult Fatigue Survey 190 96.4% 197
Adult Pain Behavior Survey 190 96.4% 197
Adult Pain Interference Survey 188 95.4% 197
Adult Physical Function Survey 102 94.9% 197
Adult Physical Function with Mobility Aidb 85
Adult Satisfaction with Participation in Social Roles 186 94.4% 197
Adult Sleep Disturbance Survey 188 95.4% 197
Comment Form 252 86.9% 290
  1. a Does not include one 18 year old, and does not delineate between 2 and 4 and 5–17
  2. b Used in lieu of PROMIS® Adult CAT Physical Function instrument if the participant states the use of a mobility aid